Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Blood Test Positive, Biopsy Negative...what Gives!?

ekdumas19

Recommended Posts

ekdumas19 Apprentice
ekdumas19
Posted

Hi all

So I have had a long journey with stomach problems begining once I started high school. I went from being diagnosed as lactose intolerant to being diagnosed as a celiac via a blood test once i finished my freshman year of college. The celiac diet worked great for me for a few years-then all of the sudden i started feeling poorly again. I decided to finally see a gastro guy and got a biopsy. He was shocked that I had been on a gluten free diet for 5 years and it was never confirmed with a biopsy. But the biopsy came out negative or as the nurse and not the doctor informed me "there was no sign of sprue". I guess my question is, because I wasnt eating any gluten at the time-could that be the reason the biopsy showed no sprue? Even though the doctor said i did not have celiac disease i continue to eat gluten free, though I continue to feel sort of off and on badly, and have now taken dairy out of my diet in hopes that will give me some relief. Has anyone had a biopsy? Were you still eating gluten at the time when you had it done?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


VydorScope Proficient
VydorScope
Posted

First of, even the ppl that still believe in the bisopy would tell you that after FIVE YEARS of gluten-free there is no way it could be postive.

Your blood work is postive, you have celiac disease. As for stilll feeling bad, what has changed recently in your diet? Go back over everything and make sure some gluten is not sneaking in some place.

PreOptMegs Explorer
PreOptMegs
Posted

My biopsy was negative as well, but my blood tests were positive. Basically, I showed so much improvement on the gluten free diet, that it was obvious what the problem was. Also, if you had been on a gluten free diet for so long and then had the biopsy.... some healing of the intestines definately could have occured. Basically, stick to the diet that makes you feel the best. good luck

Lymetoo Contributor
Lymetoo
Posted

Read this!

Open Original Shared Link

Interestingly, written by a celiac veterinarian. He says soy, casein [in milk], and others are all bad for us.

I'm new, but it sounds like you're indeed a celiac and I agree about the negative biopsy. A negative biopsy caused me to not be dxd for 30 yrs!!!! No telling how much damage has been done to my body because of it!!

Stay with your diet and do some reading here....maybe you'll find what it is that is making you ill.

Lymetoo Contributor
Lymetoo
Posted

up

mle-ii Explorer
mle-ii
Posted
Read this!

Open Original Shared Link

Interestingly, written by a celiac veterinarian. He says soy, casein [in milk], and others are all bad for us.

I'm new, but it sounds like you're indeed a celiac and I agree about the negative biopsy. A negative biopsy caused me to not be dxd for 30 yrs!!!! No telling how much damage has been done to my body because of it!!

Stay with your diet and do some reading here....maybe you'll find what it is that is making you ill.

Very interesting reading eh? :) I read the entire site and was pretty amazed.

In fact that site is the older one, here's the newer site:

Open Original Shared Link

Sorr, back on topic, ekdumas19, the gut most likely healed in that amount of time. I'm guessing that something recently changed to give you new problems.

ekdumas19 Apprentice
ekdumas19
Posted
  • Author
Very interesting reading eh? :) I read the entire site and was pretty amazed.

In fact that site is the older one, here's the newer site:

Open Original Shared Link

Sorr, back on topic, ekdumas19, the gut most likely healed in that amount of time. I'm guessing that something recently changed to give you new problems.

Maybe I do have another allergy on top of this one-and yes that site was certainly an eye-opener. I recently got off dairy and felt quite a bit better-but i would hate to lose corn and soy-as they seem to be all that's left in this world i can put into my mouth.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


oceangirl Collaborator
oceangirl
Posted
Maybe I do have another allergy on top of this one-and yes that site was certainly an eye-opener. I recently got off dairy and felt quite a bit better-but i would hate to lose corn and soy-as they seem to be all that's left in this world i can put into my mouth.

I had positive bloodwork with a negative biopsy as well. I had been gluten-free for almost 5 months pre biopsy. NOTHING had helped me with multitudinous symptoms, some which made me think my insides were dying, until I cut out ALL gluten. Still having ups and downs but much better overall. Also still finding hidden gluten! I also am at least temporarily off of dairy, corn and soy. Very best of luck to you. There's a lot they don't know about grains and gluten!

lisa

Kassie Apprentice
Kassie
Posted

my biopsy was negative too, but blood work was positive. like everyone said if you have been gluten free for five years its not goin to show that u have celiac. my doctor also said that i could have had damage and other stuff that would of made my biopsy positive but probably lower down where they couldn't get to or see

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,948
    • Most Online (within 30 mins)
      7,748
    Stephanie94
    Newest Member
    Stephanie94
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.